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It’s a heck of a way to run a pre-election campaign. On the eve of an expected election, politicians usually spend their time playing up good news, downplaying the bad, shaking hands and kissing babies.

Mother's Day: Documenting a mother’s life — and her descent into dementia (with video)

Trish Neufeld creates legacy films for others after making one of her mother

Trish Neufeld documented her mother as she descended into dementia. Neufeld has since started her own business, making personal films for clients, as well as baby and wedding legacy films. This video appears on the home page of her website, memoryboxmovies.com

Trish Neufeld and her mother didn’t always get along. They were opposites. Neufeld was an award-winning documentary filmmaker. Her mom, Patricia Graham, was a businesswoman. “She was for community, people, public service. I was for art, making movies and having fun.”

So they argued. They also talked and texted every day, sharing every challenge, triumph and heartbreak. They were best friends.

The day her mother stopped fighting, Neufeld knew something was very wrong.

“I would pick a normal fight between us, and she wouldn’t fight back, she wouldn’t play her role.”

Neufeld would soon have the answer: A shattering diagnosis of frontotemporal dementia. The decline would be rapid and inexorable. As her mother sat next to her, the specialist they had waited six months to see told Neufeld bluntly that for the next 18 months her mother would still be able to dress and toilet herself. By 24 months, she would begin having trouble turning on the taps, using utensils and dressing. Within 48 months she would be incontinent, unable to care for herself, and bedridden. Her organs would fail and she would die.

As they left the office, her mother threaded her arm through her daughter’s and said, “I think that went really well. What do you think?”

* * *

Loss of insight, coupled with a lack of awareness about the disease is part of the cognitive puzzle associated with FTD, a form of dementia that is characterized by changes in behaviour and personality. The illness most often strikes in the 50s and 60s, progresses rapidly and has a strong hereditary pattern.

Graham’s own mother had died mysteriously when she was only 37, something Graham had puzzled over her whole life.

Neufeld first noticed odd behaviour in her mother on Christmas Day in 2007. Graham — who had been enthusiastically building a china set for her only daughter — gave Neufeld a place setting in the wrong pattern.

She drove Neufeld’s car for a long distance with the emergency brake on. For one of their regular weeknight dinners her mother called to say she’d bring over steak and salad. “She showed up with a $2.19 package of shredded beef and bagged salad. Normally she would have brought tenderloin, avocado, tomatoes.”

It was only in retrospect, after Graham’s diagnosis at the age of 64, that Trish and her mother’s friends would see what had seemed like small eccentricities through a new lens.

“I never for a minute thought it was dementia,” says Neufeld.

On diagnosis Neufeld, 34 at the time, was urged by the doctor to get power of attorney, arrange for homecare, sell her mother’s business. She was warned that FTD brings about changes in behaviour and a lack of judgment that can often be embarrassing: impulsive acts, obsessions with specific foods, and hypersexual behaviour were to be expected.

In shock, Neufeld tried to carry on with her life. She went to work, took care of her mother’s affairs, and grieved. “I came home every night, lay on the kitchen floor and cried.”

She was, she says, like a circus performer balancing plates, trying to keep each one spinning without dropping the others.

Neufeld says her mother knew she had dementia, but because of the disease’s progression, “She didn’t have the lucidity to be sad or frightened.”

But Neufeld was terrified. She was losing her mother. After being laid off from her job in the gaming industry, Neufeld seized the opportunity to “do the bucket list stuff.” They travelled to Vienna, and did a walking trip to Prague. They flew to Victoria and went to the Empress for high tea. They went with her mother’s friends on a farewell trip to Mexico. By 2011, however, her mother had deteriorated to the point where friends and family were pressuring her to get Graham, whom she had moved into her basement with a nanny, into a care home. Neufeld resisted.

She took her mother to Thailand instead. “Everyone thought I was totally and completely nuts,” she says. Neufeld rented out her Vancouver home to fund the trip. “Thailand was the best thing I ever did for my mom. It was wonderful because people were so supportive and there I could afford 24-hour care for her. She could also still swim.”

When they returned from six months in Thailand, it was time. Her mother was placed in care.

Along the way, Neufeld had been filming. “I knew I had to capture her. My mom was super excited about telling her stories. She was passionate. She laughed and she cried as she told me all the wonderful stories of her life.”

She died in 2013, six weeks before her 70th birthday.

The video is something Neufeld can sit and watch now that her mother is gone — it feels, she says, “like spending the day with her. She no longer has the ability to tell me to follow my dreams. But it’s there, in the video.”

Her mother’s illness and death had changed Neufeld profoundly. “When I was really seeking, and asking, ‘What am I going to do with my life?’ the answer was there in my mom’s video. I had asked her, ‘Were you ever worried about what I would do with my life?’ She said, ‘I knew you’d find your way.’”

Neufeld has found her way, and her new direction was the final gift of her mother’s illness. “The night I interviewed my mom, my purpose and passion came together. I knew right away that I had to do this for others: Capture the legacies of families and help them preserve it for future generations. Memories are our most valuable inheritance.”

Neufeld has created a business, Memory Box Movies, and is busy creating personal films that are “fun, funny and emotional” that will become family legacies. She creates personal biographies, “telling life stories” on film, as well as baby and wedding legacy films. Neufeld films ordinary moments, family dinners, and extraordinary moments. Her wedding biographies include the ceremony, but go far deeper, filled with documentary-style interviews that create a living guest book. Baby stories include interviews with the parents before and after the baby’s birth.

Neufeld dreams of finding sponsors to help bring the opportunity to families of patients diagnosed with terminal illnesses that might not be able to afford her services. “I know the emotional, financial and social burden a terminal illness brings. I want everybody in this province that is diagnosed with a terminal illness to be sponsored for a legacy project.”

Although the pain of losing her mother hasn’t gone away, “Filming legacy stories for other families is my silver lining.”

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